Category Archives: Diet

Down to zero

After 4 years of MG symptoms and 3 and a half years of the diagnosis, I’ve been given the go-ahead by my consultant to reduce my medication to zero. Nothing, nada, zilch.

Earlier this week, I gave my consultant an update on how I’d got on with going from 100mg to 25mg aziathioprine. The short version is that I don’t feel any different now – there was a time when I wasn’t sure between 75mg and 50mg as my symptoms were worse than they’ve been in a while. But I waited it out realising that a month between stepping down doses wasn’t long enough so I’ve been waiting 2-3 months between reducing my dose.

Now comes the real test – my next step is down to zero then down to 1mg of steroids every second day then nothing. So totally drug free. 2017 will be the year I tested going drug free.

This is what I’ve been wanting for years, what I’ve been working towards, but this week I’ve felt a little numb to it. I’ve not been sure how to feel about it so I’ve put off thinking about it knowing that I’m away this weekend. In the middle of nowhere, with lots of time to think. But now I’m here and I’m still struggling to feel it. 

Thinking about it, it’s probably because now comes the scariest part. The ultimate test of whether the thymectomy and healthy lifestyle (early nights, good diet and lots of exercise but not too much) will allow me to stay in remission. Proper remission. 

I’ve been told it’s fine to take 1mg if I’m feeling weak, which is a good back up. But when I finish my latest prescription in a few days time, it will be time to step into the unknown. Wish me luck!  

Treating a set back like an experiment

So it’s happened again – just when I started to feel completely unphased by my myasthenia gravis I’ve had a set back. This is the way with a condition that fluctuates but it doesn’t make it any less annoying. 

Two days before I was due to go on a relaxing break to Spain my right eye starting playing up. I had a good night’s sleep and it seemed improved but then, the day before I was due to go, I had a later night than expected and woke on my first day off with a bad case of ptosis – dropping – on my right eye. 

My ptosis is usually mild now – a slight droop which is annoying – so I’d forgotten what a bad case feels like. I count a bad case as when my eye lid is almost or completely closed. No matter what I do it can take days or weeks to right itself and in the mean time it makes everything a bit more of a challenge. It means:

  • looking anywhere other than down becomes problematic – looking straight ahead there is double vision as the right eye tries to adjust with a more limited field. This means I spend most of the time with my head tilted up and have more problems getting around
  • having conversations becomes challenging – you can’t really look people in the eye because when you try their eyes move around their face. Oh, and you over-analyse every look of your conversation
  • the eye lid feels really heavy and is constantly uncomfortable – I used to wear cotton patches during these times for comfort. It’s not great when working in front of a computer screen all day

I’m fairly sure that I’ve run myself down in the build up to the holiday – taking on too much and not giving my body the rest it needs. Then there was the sharp change of climate and routine which probably didn’t help either. 

Rather than waiting in a depressed stupor for things to return to ‘normal’, I’m taking a scientific approach. I’m testing out the impact of different things and will hopefully have more knowledge about how to treat myself next time. So far I’ve tried:

  • Sleeping longer than normal – on holiday I had between 9-10 hours sleep a night. This is more than the  7-8 hours I get normally. This seemed to make it worse rather than better.
  • Cutting out alcohol – after a break from booze, I had slowly reintroduced it to my routine and was having at least 2 drinks a day on holiday. Over the next week I’ll be removing alcohol again to see if it has an impact
  • Upping my steroids – I’ve upped my steroid intake from 2mg to 3mg and hoping that extra tablet will help. If I don’t see an improvement over the next few days, I’ll increase it again
  • Eating healthier – while I didn’t eat a lot on holiday, what I did eat wasn’t particularly healthy. I’m on a detox this week to aid healing including keeping it simple with just lean meat and green veg and lots of lemon water
  • Cut down on caffeine – before I went on holiday, I was drinking more coffee than I ever have. While away, I cut down to 1 cup a day and I’m going to try to keep a reduced intake now that I’m back
  • Rest – on holiday I did very little that could be described as ‘active’ for the first two days. I then slowly reintroduced exercise – gentle walks and relaxed paddle boarding. Now that I’m back I’m going to do less exercise than normal this week 
  • Heat – unlike many others with MG, I find heat from a sauna, bath or weather works well for my body. Now that I’m back in an Autumnal Scotland, I plan to use the sauna every few days (as I had just before the photo above)

352/365 – First week back

After two lovely weeks of festive holidays, this five day week back at work was a bit of a shock to the system. By 7pm on Friday night, when leaving work, my eyes felt heavy enough to anchor a ship.

Still, I’m proud of myself for sticking to a couple of my resolutions. In terms of my health goal,  I had a really good week. I did two hot yoga classes, two lunchtime gym sessions, one 6.5km run and a 5km run with 5×2 mins boxing rounds. 

I also ate very well and have gone back to eating mostly gluten and dairy free (excluding milk in coffee which I just can’t cope without). The only thing I’m (continually) keen to improve is cutting down on refined sugars – that’s something to try to improve next week.

In terms of sleep, I’ve not been great but so far my symptoms have been in hiding. Having caught up this weekend, I’m determined to do a little better next week. 

I’ve also had a check in with my doctor and got my first blood tests of the year back clear. 

After a restful weekend, it’s time to build on last week and also to sort out a schedule for keeping in touch with loved ones. One week down, 51 to go. 

313/365 – Tips for people with myasthenia to keep well this Christmas

In exactly one month, it will be Christmas morning and our bodies will be sighing in preparation at the gluttony to come. As a diehard festive fan, the number of positive things I can list about the season of love and giving are endless. A few of my favourites are: 

  • spending an extended period of time with family
  • catching up with friends doing Christmassy things 
  • mince pies washed down with mulled wine

I’m incredibly lucky that Elaine shares my love of all things Christmas and we try to do lots together. However I’ve noticed over the last two years that my symptoms get worse in the build up to Christmas. Why? Exactly because of the gluttony that the festive period entails. 

This year I would like to not have to explain to my loved ones that the reason I’m looking ‘bad’ is because I’ve been having too many festive spirits. So I’m going to be attempting a more restrained December. Here’s how:

  1. Selecting my Christmas nights out carefully: there tend to be endless invites for catch ups over Christmas and before you know it every night of your week will be busy. I’ve done this and it’s stupid. You end up skint, you end up exhausted and you end up often not really enjoying the time spent with friends. January needs some brightening up, so why not hold off some of the catch ups until then?
  2. Ensure I have several healthy days a week throughout December: in December, we are surrounded by sugary treats and drinks so it’s no wonder our bodies are crying our for a detox by New Year. I’m going to try to give my body an early detox this year by making sure I’m eating healthy for around half of the week (mon-thurs). That way I’ll feel more deserving of a mince pie and a mulled wine. 
  3. Spend more time at home relaxing: just because I’m not out partying doesn’t mean I need to be at work or busy. This year I’m going to try to give myself at least 2 evenings a week of time spent relaxing. I want to do a bit of Christmas crafting and I also have my favourite Christmas movies to get through. I might even get to watch Home Alone 1, 2 and 3 this year.
  4. Keep up my exercise schedule: I wrote last week about struggling for fitness motivation at present and this tends to only get worse during the festive season as I repeat ‘I’ll start again next year’.  This year I intend to maintain my 3-4 times a week workout schedule right through Christmas and New Year. 

By following the above four steps, I hope to have a strong and healthy start to 2016. 

298/365 – Sick of feeling sick

Over the last few weeks my eating habits have been very odd and it’s making me grumpy. I love food but my body has been stopping the enjoyment of late. One moment I will have very little appetite and the next I feel sick with hunger. Then not even an hour after eating something to quench that hunger, I feel starving again. Yet when I go to eat, I’m full very quickly. Like I said, annoying.

A few possible reasons have come to mind: how harsh the aziathioprine is on my system, because my diet hasn’t been good for the last while, and my low blood pressure combined with a high metabolism. I wonder if it is a combination of the first two or all three.

This week I’m going to try eating healthily and ensure I’m getting a variety of different nutrients. I also will make sure I’m eating enough as I had dropped a kilo and a half when I was weighed at my doctors last week. Ideally, I would also like to step down the aziathioprine before I see my consultant in December but I’ll need to check that.

264/365 – Clean up to Christmas

This week, Summer has felt like a distant memory  – it takes a little longer in London – as scarves and winter jackets have been re-appearing for cold mornings and evenings. I’ve been slacking a little with my exercise regime recently and when I hit the gym on Friday lunchtime I had a disappointing rowing time for 1,000m (as pictured above). With no other fitness challenges lined up this year, due to the events season being just about over, I need a plan to keep myself motivated to stay fit between now and Christmas. I want to be in the best shape possible as I continue stepping down the last 2mgs of steroids and then hopefully begin the same process for immunosuppressants. 2016 could be the year I try being medication free, but I’ll need to be strong to do it. That will take a tough exercise schedule but also a healthier diet again.

Exercise plan

I’ve decided to start planning 4 fitness sessions during the working week and my plan is to make at least 2 of them after work to stop me spending money while being unhealthy socialising in the pub. I’ll be spending at least an hour each day keeping my body strong and then if I do exercise at the weekend it can be for fun – like playing tennis or going to a salsa class/club. 

Elaine told me this week that everything the British Rowing Team did in the build up to the 2012 Olympics, they asked themselves ‘will it make the boat go faster?’ I need to apply the same principle over the next few months to choices I make – ‘will it help me come off medication?’. If I start to feel that the exercise is having a negative impact on this question, I’ll re-evaluate.

Diet and lifestyle

While I’ve continued with some parts of the gluten-free, dairy-free and fun-free adapted diet I had at the start of this year, mostly gluten-free and eating soya yoghurt, I’ve slipped up and have been consuming a lot of sugar, caffeine and salt.  

My plan for the next few months is to continue the kind of meals I’ve been eating, as they are mostly healthy, but adapt the way I’ve been snacking. Try to eat popcorn rather than crisps, 70% dark chocolate only and try to cut back my caffeine to one coffee and one tea a day.

I know from before how much better cutting out the unhealthy snacks and gluten made me feel so it’s time to try again. I feel that will help me come off medication. 

Additionally, I’m going to try getting 8 hours sleep every night as that will help my body cope  with the medication reduction.

203/365 – A braw Scottish break

After five glorious days in my beautiful homeland, I’m now on a plane back to London feeling tired but super relaxed. As I recounted in my 202nd and 200th blog, we’ve travelled on four ferries, visited three islands, clocked up around 900 miles in our hire car, seen numerous Scottish wonders and climbed Arran’s highest mountain. Not bad considering we only had four days.

This morning I tried to go on a run, but only had 10 minutes before breakfast so it was more of a short, fast sprint. It’s just as well really because my legs were less than subtlety reminding me of all the climbing they did the day before. I’ve continued to feel heavy limbed today after scaling Goatfell. After convincing Elaine that we should visit the Machrie Moor stone circle (pictured above) on the west of the island, the 4-5km walk felt like a real challenge with my tired wee legs. They made it, but needed some gentle encouragement at times.

The positives

While I’m physically tired, thankfully the fatigue I’ve been feeling in London recently has faded in Scotland. Four out of the five nights we’ve been away I’ve managed to get eight or more hours sleep and I think this has had a significant impact to my energy levels.

 Also, getting out in the fresh air for extended periods has definitely helped. It has made me feel strong but also tired me out in a wholesome way. Give me a wrapped up stroll home over running to catch the tube anyday. 

The negatives

While it might be one of the most beautiful countries in the world, it’s cuisine has got to be one of the most fattening. If I see a cooked breakfast, giant homebake or battered anything in the next while, I’ll be running in the other direction. Also, why does tablet have to be so moreish?! I’m planning a week of nothing but salad to unclog my arteries and delay my imminent diabetes.

Also, Scottish people like a drink for many reasons, a key one being they need warmed up on a chilly July day (I’m coming back in the summer). My liver needs a detox after the last few months and this holiday has been a glorious send off to the joyless land of sobriety.

While I can’t say I’m looking forward to being back in London, I feel in a much better state than when I left. Thank you Scotland for a memorable, fun and healing few days. 

175/365 – Diet goals

So around six months after setting myself some challenging diet goals, I’ve fallen back into some unhealthy habits. As this post from January sets out, I did some reasearch into the food groups that could be causing my body additional strain and inflaming my MG.    The product of that research was a gluten and dairy free diet cutting down on red meat and sugar. It was a tough ask and right from the start was meant to be a trial to see how my body responded. 

I’ve been consistent in two of the challenges and failed miserably at the other two. 

My success stories are:

  • I’ve replaced gluten and wheat products for free from alternatives and have stuck to this pretty consistently with a few occasional glutinous treats here and there. 
  • I’ve significantly cut down on my red meat consumption and very rarely have it now. 

My failures are:

  • While I’ve replaced yoghurts for soya alternatives, and for a while switched cows milk to the almond substitute, I struggle to exist without cheese and semi skimmed in my coffee. While I’ve tried to eat goat’s cheese wherever possible, sometimes a slice of Roquefort or Brie is just too damn tempting. It turns out life is too short to deprive myself of good cheese and good coffee.
  • I have failed spectacularly at cutting down sugar. I have succeeded in switching my work time sugary treat to 70% dark chocolate and Nakd-type bars which are made of natural sugars. But, it’s in the evenings that I’ve struggled to have resolve. This continue failure of giving into cravings, often absent mindedly, has shown me how severe my sugar addiction is. I struggle to get through a single day without some kind of sugary treat – I hate feeling that anything has control over me but I think this well and truly does.

Aside from these points, I’ve also been more conscious about the amount of potassium and magnesium I’m eating. This has been relatively easy as I tended to eat a lot of things containing these anyway, but now I’m just more conscious of it.

What’s next?

I’ve looked at a few different options over the last six months to see if there is a better diet out there. I’ve looked at low carb options, like the ketogenic diet, as someone in the MG community said it had worked for them. Personally, the more I looked into it the less sure I was. I’ve also looked at trying the 5:2 for a short term fix as eating little for a couple of days is meant to give your body time to heal and recover. However, it would be difficult to do this and not feel sick with the amount of medication I’m taking at present. 

While I’ve come to terms with the fact that diet alone isn’t going to control my medication, when I eat healthily I definitely feel stronger and better. I’m going to stick with the gluten free and no red meat. Most importantly, after this weekend I’m going to try to get this sugar addiction of mine under control.

Read more about diet and myasthenia gravis here. 

153/365 – Post Camino resolutions

As I discussed on day 140, Elaine and I spent time once we arrived in Santiago de Compostella last year writing separate lists of what we wanted to do differently on our return home. I found mine just before coming away and overall it made me feel positive about the last year. This year it took a little longer to process lessons learned as we were busy in the aftermath of the walk. Yesterday, on the beach in San Sebasti├ín, I spent time thinking about what changes I want to make following this trip. 

Alongside quitting smoking for good, the two other ones that relate to myasthenia are:

1. Find healthy ways to cope with stress 

Stress is a trigger to increasing symptoms of myasthenia, and I realised how unhealthy my methods of coping with it have been recently. I have been resorting to drinking, binge eating unhealthy foods and occasionally smoking to cope. These are all further detrimental to my health and the myasthenia. Alcohol especially prevents good quality sleep, which is especially important for someone with MG. 

If anyone has useful techniques or any websites/book you would recommend on this subject, please feel free to share. The vast amounts of information available about stress make it hard to know where to start.

2. Better diet 

As mentioned above, my diet has been affected by stress of late and I’ve been eating an unhealthy amount of sugar, processed food and gluten/dairy. I’ve also not been making time to cook foods with the nutrients I need. While I don’t think I will return to a full dairy free diet, I plan to completely eradicate gluten, cut out the majority of dairy, significantly cut down on sugar and try to eat low fat protein. 

The others, joining the Spanish club at work, beginning weekly dance classes with Elaine and getting out of London more often for walks, are less relevant. They do however focus on quality of life and will only be possible with a better work-life balance. 

127/365 – Time to detox

I’ve had a few very busy weeks in and out of work. With a good friend of mine down to stay for a week, a trip up to Edinburgh, starting a new volunteering adventure and working long hours to prepare for the election/new administration, I’ve been feeling worn out. Due to this lack of time to myself and lack of energy, I’ve been eating poorly. My gluten and dairy free diet has been put on hold while I’ve just been grabbing whatever is most convenient. I’ve been living on ready meals, packet sushi and sugar fixes. As a result, my body has felt poisoned and I’ve noticed a difference in my mood, my energy levels, my attention span and my performance when I’ve been training. 

This weekend I’ve decided to cut back on the rubbish I’ve been eating and try to get back to the health kick I was on just a month ago. Even if it doesn’t last right through next week, when work gets mad with the new administration, I’ll feel better for giving my body the nourishment it needs.